Starting Chemo in December 2013

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  • KLI
    KLI Member Posts: 52
    edited January 2014

    Hello everyone have read all the posts but feeling fuzzy in the head. Had tx 3 yesterday went today for neulasta feeling tired and blah and headachey.

    I have used ice chips during tx but I think it froze the roof of my mouth this time it is raw and peeling almost like if you burn it with pizza.

    hoping next few days are bearable. Sounds like so many of you on same day are doing well here is hoping it continues to improve.

    I have had rash around port but steroid seems to be helping it. 

    Count it all joy sounds like you had really rough glad you are making the most of it.

    Courage ladies.....

  • Carol99
    Carol99 Member Posts: 116
    edited January 2014

    Jackie, I love your attitude!!  I'm going out for dinner & wine too.  

    Rates of survivorship are higher but rates of women getting dx are way higher too!  

    My daughter & niece are raising money and walking in the Avon walk.  I think it's wonderful, I really do, I've done the walk myself and it is a wonderful Inspiring time, but in that case I want to scream about the products avon sells containing cancer causing agents that we all use!

    Yes Kim from CA, no taxol I've asked about it because everyone seems to be getting it.  My MO said because my invasive part if my cancer was very small and I'm stage 1a.  I feel nervous about it though, I may bring it up again.  My cancer is grade 3.  It was found by MRI, I was a patient in the genetic program at Dana Farber, every 6 months MRI/mammo.

    Have a great weekend everyone! I hope your as comfortable as can be.

  • momat927
    momat927 Member Posts: 173
    edited January 2014

    NEskir,  99 , i just read/ noticed that you are in a genetics program. I am getting tested February. My MO said that he can do the testing with my blood work.  If I am positive, I wonder what happens next? I would want genetic counseling. I won't jump ahead, but there is much cancer in my family and I am Ashkenazi.  Did you get tested by a special program or through your MO? I worry about cost but the MO said something about enough evidence to support my getting it.  I would be grateful for any info you might share. Amy(momat)

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2014

    momat, I don't know if you're talking about the BRAC test or something else, but my BRAC was ordered by my MO and insurance paid it. I have family history. Luckily, was neg, but here I am anyway!

    Had my N shot today, then went to see "August osage county". Was a good movie. Nice to get out and forget about BC for a while.  My steroids from this morning are wearing off. Going to go see if I can take a nap...wishful thinking anyway!

    So far, so good with SE's, other than the Big C  starting to rear it's ugly head.

    KLI, hope you feel better soon~

    have  a great week-end ladies! Keep those SE's in check!

     


     

  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    count it all... Sorry for your set back. 

    I am in the hospital night #2. Started with fever yesterday and after 8 hours in a gurney in the ER, they finally admitted me. WBCs are elevated so I'm fitting something. But my #2 AC for Tuesday has been postponed for a few days. 

    Hope everyone is experiencing minimal SEs. 

  • momat927
    momat927 Member Posts: 173
    edited January 2014

    keepthefaith, yes BRAC.  Thanks

    RHGSR, So sorry to hear this !  But thank goodness you are being cared for.

    Amy(momat)

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2014

    rhgsr, I'm sorry to hear you are in the hospital. Feel better soon and get to your next TX!

    I was called by the financial advisor lady at my Cancer Centers' office prior to chemo yesterday..  Anyway, didn't get anything figured out then, so had chemo, went to get my shot today. Same lady took me to her office, wanting this yrs' full deductible to be taken care of! Really??? It is HIGH!
    So, after we discussed my situation further, I gave her a small check; she reassured me that she could help with it. She offered the Neulasta shot to be fully  paid for, thru the drug company, I think; and, that she would see if I could qualify for a foundation grant that helps cancer patients! She just needed last yrs tax return. I am hoping that they can do that; just the Neulasta part was over $2k! So, I am feeling very blessed today! I have been worrying about it since the new year started and how I would pay another high deductible so soon. I just wanted to share in case some of you all are in the same position. Just ask for help! We never know what is out there. I am single, self-employed, make enough to get by, but at times like this, it is a struggle. I am not good at asking for help, but I am learning! I hope my experience can help someone else.

  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    RHGSR, so sorry that you're in the hospital.  You're in my thoughts.

    Keepthefaith, I hope you get the grant.  There has to be some good things that happen in the mist of all this. 

    I finished round 4 AC today.  So glad to be done.  Already feeling a smidge Nauseous.  I can't wait until next Saturday when the nausea is gone.  I'll be feeling like I drank one to many glasses of wine for the next week.  My friends asked me if I want to go to a wine tasting tomorrow.  Ummmm, no thanks!

  • Carol99
    Carol99 Member Posts: 116
    edited January 2014

    Amy, yes it was a blood test, Myriad labs.  I am adopted & my birth mother had BC at 36.  That info alone was enough to be tested, insurance covered it all.  I had an  my ovaries out a couple of years ago.  the big thing is that my daughter will be tested & my son as he could be a carrier.  Once the mutated gene is identified the next test is a cheaper one, they know exactly what to look for.

    My last appt. when I had my MRI that found my cancer, I had gotten the plastic surgeon list to discuss propholactive mastectomy.  Wish I did it earlier.

  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited January 2014

    Thanks all for the support & encouragement.  :)    I'm appreciating so much being home in my own bed!

    RHGSR - I'm so sorry you're in the hospital now.  I found the first time it almost didn't matter if they figured out what your body was fighting.  They give you so many meds, it's bound to help with anything!!  I do hope your body fights its way back soon.  Are you getting any sleep, or is there someone new in your room every 30 minutes??    ;)    

    keepthefaith - you mentioned the big C, and I think we're almost all struggling with that each time.  I wanted to throw out one more product that might help you or someone.  I was doing Senecot and all the right fruits, etc, and nothing worked for me.  My mom was here, and she had my husband go buy me liquid glycerin suppositories.  They were very simple to use (think mini turkey baster!), and after 2 days of misery, I was in absolute comfort within 15-20 minutes.  Hands down, my new favorite product!   :)   

    Having a glass of red wine at home tonight, while I've got this break.  Gotta say I'm missed my wine!!

  • beths1
    beths1 Member Posts: 44
    edited January 2014

    Hello BGC ladies,

    It is so encouraging to hear that you are doing so well and congrats on finishing another treatment and for so many your last red devil.! 

    I go Tuesday for # 3 and can't wait to be moving on!  My rash is really bad,  all over my body and blistering in spots.  Nobody knows what is causing it.  Had a biopsy today and hopefully we'll know next week.  I am so focused on getting # 3 out of the way, I don't want anything to stop that, even this bizarre rash!

    You all continue to inspire me...for that I say THANK YOU!

  • beths1
    beths1 Member Posts: 44
    edited January 2014

    RHGSR and Count it all joy:  Ladies, so sorry to hear about your hospital stays.   You both are strong and brave and it won't be like this for always.  

    Love and prayers.

    Beths 1

  • Carol99
    Carol99 Member Posts: 116
    edited January 2014

    good morning,

    Most of you ladies are ahead of me in treatment, do you feel like the SE's are worse as treatment goes on? My second round was awful but I had a port put in that morning before chemo and I don't tolerate anesthesia very well so I think that had something to do with it.

    I know it affects us all  differently ,just curious.

  • momat927
    momat927 Member Posts: 173
    edited January 2014

    NEskir99,  Each time seems a little easier for me in terms of SE's, but fatigue worsens. I am just starting day 3 of Round 3 so will know pretty soon if this pattern of being less intense continues.   I will definitely share my experience with you if helpful. I will say i found getting the port in very difficult initially.  Hang in there. Amy

  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    NEskir99, My first round seemed ok once I got my meds adjusted.  Nausea didn't really hit until day 3 and lasted 6 days, but it was doable nausea, and I did get thrush tongue and minor mouth sores.  Round 2 was a little worse with the Nausea and really bad with the heart burn but all other side effects were easier, I didn't lose my appetite too bad.  Round 3 was the easiest, I started acupuncture, I don't know if that has anything to do with it but I'm going to keep going just in case.  The nausea was still there but minor and no heart burn or mouth sores.  One new thing in round 3 was my feet feeling raw and tender, but I did work out every day.  MO says I need to force myself to rest a little more and stay off my feet.  I'm extremely active and haven't let chemo get in the way of that.  I guess I need to slow down a little.

    Round 4, yesterday, so far has me worried.  I have nausea that I usually have on my worst day and I don't have the energy that the steroids usually give me...sigh. At least its the last AC round!

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    RHGSR I am sorry you ended up in the hospital.  Sending prayers that you recover quickly.

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    Sorry about the rash Beths1.  I had one that itched horribly on my chest and back.  After the last red devil, that night I took the steroid pill and the next morning there was no more itch and the rash had dried up.  I think taking a whirlpool tub bath set it off to begin with.  I had put some bath salts in that were suppose to make your skin soft.  OOps.  Didn't you say you had a hot tub?  Maybe that is causing it.  Good luck.  I hope it clears up soon.

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    Neskir I have found that each treatment has gotten better and better for me.  I don't like to talk about in case someone brings it up because some of you are having such a hard time. The last a/c has definitely been the easiest.  No headache, nausea etc.  But I am a little more tired  Like they say everyone is so different.  I'm sorry you had a hard time after the port.  It probably did have something to do with anesthesia.  I am grateful for the port, but will be over the moon when it is time for the removal.

  • momat927
    momat927 Member Posts: 173
    edited January 2014

    Neskir, I noticed finally (geeze chemo brain anyone? ) that my cocktail is not the same as your's. That changes things, but we are all going through this together, so I am here for you too. Amy

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited January 2014

    NEskir99, I am day 3 of 3rd AC also. Seems like my SE profile is fairly constant. The nausea is controlled with 36 hours of zofran. Constipation much better this time since I started taking senna, one a day on the evening of chemo. Better then waiting 3 days and having to take more.  Fatigue yesterday was a bit worse.  The Claritin has been working for the nuelasta bone pain,  I also started taking nexium daily for a few days (took my hubbies) on the evening of chemo to prevent the day 3-4 heartburn I was getting the last time. 

    I hate to take meds but I have learned better to take them before SE occur and prevent them  then try to chase after them. I guess the first two rounds were learning experiences of what I would get and this round I hope to prevent some annoying ones.  

    One thing that still bothers me is the lack of concentration the first week after chemo. I can read a few pages like a Magazine article but not concentrate on reading a book for long. Too bad since I have a dozen  EBooks I was planning on reading.  Only got through one so far.  

    Best to those who landed up in the hospital, hope you are out soon. 

    Barbara

  • kimie06
    kimie06 Member Posts: 215
    edited January 2014

    DJJ .. I have the same this time with a little bit of mouth soreness and my FEET !! feels like I wore a pair of heels and stood for 8 hours strait, well maybe not that bad, but sensitive.  I am even having a little bit of heart burn, uugghh.  I have round 4 on Tuesday then onto the taxol. met with the radiologist yesterday, 6 weeks of radiation to follow treatment. 

    Rhjsr.. sorry for this setback, but let them get you sorted out, you need to be at your best.

  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    feeling stronger this morning. MUCH better than Thursday night. Hoping to go home today.

    Was suppose to have AC #2 on Tuesday but doc postponed it until Thursday because of all of this. Probably a good decision but I hate having to wait. Chemo is awful but I was ready to get that second AC under my belt.

    Of course not looking forward to the SEs as whatever this is/was has wiped me out. 

    Thank you ladies for the well wishes. They always boost my spirit. 

  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    so glad to read most everyone is tolerating SE so well, it sure is a learn as we go experience and all the tips have helped me so much.  Sorry to hear of the hospital stays, that we can all do without!  

    What pain are you having in the feet?  I haven't experienced that, yet...is it nerve or throbbing or ???  I'm reading taxol may cause the nerve issues, I hope not.  

    I have a consult with radiation next week, not sure I will go and may postpone, between weekly blood draws, weekly PT, weekly PS and the MO and chemo I'm so sick of medical appointments.  I've done allot do research on radiation for my case, and will say I'm 99% sure I'm not doing it.  Two main reasons...this red devil scares me enough to watch for heart issues, I don't want to add this on top of it.  I had a double MX to help avoid this, and my tumor was small, did have 3 positive nodes, but all removed.  Have clear margins, and from what I read I'm an on the fence patient.  It could come back in the scar tissue locally but is rare, and my aux nodes are gone...so what would they burn?  The chest nodes were clear and I would think chemo is finding the strays...I understand it for those who have had lumpectomy...any BMX ladies considering radiation?    I will listen to what he says, but I'm not willing at this time to do radiation for a 2-3% help in reoccurrence! I'm sticking with the slash, poison and 5-10 year hormone drug I'll be on and for me that's giving my all towards fighting this.

  • kimie06
    kimie06 Member Posts: 215
    edited January 2014

    jackieak ... the feet .. they are just sensitive more then anything they don't hurt at all till I stand, and its totally tolerable just really annoying.

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited January 2014

    I am jumping in so so late here.  I have read up, and would like to join in.  I am on taxol first.  Just had my 5th weekly dose this past Wednesday.  The only issues I have had with taxol are: headaches(light sensitive), mild aches in legs and insomnia!  My doctor prescribed ambien just this week.  Last night was the first time I took it and I slept better.  My hair lasted a long time.  I shaved it last night.  I had cut 15 inches off after my first dose so I could donate it.  I just couldn't waste it.  After 12 taxol, I'll have four FAC treatments and then 5-6 weeks of radiation.

    Jackie- I have a lymph node in the chest they found after BMX.  I am so blessed they found it because it is an internal one. I am traveling 6 hours (12 total) a week to drive to MD Anderson.  Because my node is "unusual" I will have to have radiation there as well.  As long as it is gone by this time next year- I'll do whatever!

    I have 3 girls: 9, 5 and 1.  The baby was born 12-10-12.  A year later I am off work again, but for BC not maternity.  It is what it is. Anyone else doing taxol first weekly then FAC?  It seems to be the standard MDA thing.  Sending everyone hugs and a restful weekend!

  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    hi Jodi. My children are similar in age to yours. I love your saying " just keep swimming" !! I have used that a lot during this ordeal. 

  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    hi Jodi and welcome...we will all be glad to hear some Taxol advise.  I have a friend who was triple negative who had taxol first then the red devil, not sure if the type of BC has anything to do with it.

    Node in the chest I would say definite radiation, I hope that all goes smooth for you.  Sounds like a wonderful family you have, and you are a busy mom...no time for this BC crap...keep swimming indeed!

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014
  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    Jackjeak, The feet tenderness is not the Neuropathy that we have to worry about with the Taxol.  That's a whole new worry.  This is caused by the Adrimycin and not everybody gets this symptom.  Prevention is comfortable shoes, icing feet, not standing too long, no soaking in a hot bath.  I think I helped it along by working out too much since round 3 was the easiest round for me I took advantage of it and was on my feet a lot.  MO said that I need to slow down a little and modify my workouts. I've taken it easy the last 3 days and already my feet are feeling better.  I put a description of it below.

    Hand-foot syndrome, also called Palmar-Plantar Erythrodysesthesia, is a side effect of some types of chemotherapy. Hand-foot syndrome causes redness, swelling, and pain on the palms of the hands and/or the soles of the feet. Sometimes blisters appear. 

    Hand-foot syndrome occurs when chemotherapy affects the growth of skin cells or capillaries (small blood vessels) in the hands and feet. Once the chemotherapy is out of the blood vessels, it damages the surrounding tissues. This can cause symptoms of hand-foot syndrome that range from redness and swelling to difficulty when walking.

  • beths1
    beths1 Member Posts: 44
    edited January 2014

    Welcome Jodi!

    Great support here!

    Beths1

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